On February 29th, please join us in raising awareness about APS Type 1 as we celebrate the Rare Disease Day! Post messages, photos, videos, or whatever you think best shares your story on social media and add the hashtag #APS1WeAreRare.
February 29th is the International Rare Disease Day. This day is dedicated to raising awareness and generating change for the 300 million people worldwide living with a rare disease, plus their families and caregivers. By adding our voices to this effort, we amplify the message that people impacted by rare disease are actually *not rare* at all.
A disease is considered rare if it affects fewer than 1 in 2,000 people (or fewer than 200,000 people in the U.S.). Given that we know of only 150+/- cases of APS Type 1 in the U.S., we are definitely #APS1WeAreRare. However, since there are over 10,000 identified rare diseases, the number of people with these conditions is significant. Still, any particular disease is rare, and physicians may go their entire career without seeing an affected patient. Without organizations like ours, patients can go their entire lives without ever meeting another patient. Often, symptoms overlap with common disorders. This makes diagnosing and effectively treating rare diseases very challenging for most physicians. It is particularly difficult for patients who do not live in a major metropolitan area and lack access to newer medical technologies.
The APS Type 1 Foundation was started to ensure that patients receive the best care possible and that no one should have to wait for a diagnosis or treatment for APS Type 1. Help us further this mission by using social media to share your personal journey with APS Type 1. Post messages, photos, videos, or whatever you think best shares your story on social media and add the hashtag #APS1WeAreRare.
Thank you for keeping us in your hearts and minds as our journey continues.